The Anna Westin Act

Changemakers: Advocates work to pass legislation to eliminate discrimination for those with eating disorders

Anna Westin, left, and Kitty Westin
Photos courtesy of the Westin family

"Had she gotten access to the care she needed, I truly do believe that she would be alive today. I just really wanted to transform the horror of her death into something good." - Kitty Westin

Kitty Westin, the Emily Program and Senator Amy Klobuchar are leading advocates working to pass legislation to eliminate discrimination for those with eating disorders.

Imagine your doctor telling you you're very ill, and without immediate and adequate treatment, you will die. Worried, you call your insurance company to verify coverage, and they tell you they don't believe you are really that sick. Wait a few weeks, they say, and call back if you get worse.

That scenario can and does play out for many patients with eating disorders. For some, it's fatal.

A group of Minnesotans is leading an effort to eliminate that scenario. Legislation called the Anna Westin Act (AWA) - named for a Minnesota woman who died from anorexia nervosa - has been introduced in the U.S. House and Senate, with sponsors from both sides of the aisle.

The bills clarify that mental health parity includes treatment of eating disorders - meaning insurance companies must cover care comparable to other illnesses, and in particular, residential care. In addition, the bills open up existing funds to be used for education and training grants for medical professionals, school staff and others to aid in recognizing and preventing eating disorders.

Leading the charge in the Senate is Amy Klobuchar (D-Minn.). Much of Minnesota's congressional delegation has pledged support as well. That kind of bipartisan support has advocates "cautiously optimistic" that legislation will pass. And, as supporters note, the stakes are high.

The disease affects people of any gender, race, age and socio-economic group. According to the Eating Disorders Coalition, a national advocacy group, at least 30 million Americans have an eating disorder and up to 20 percent of them will die from their disease - the highest rate of any mental illness.

For Kitty Westin, passage of the bill bearing her daughter's name would be the culmination of almost 16 years of advocacy since Anna's death at age 21. "Had she gotten access to the care she needed, I truly do believe that she would be alive today," Westin says.

Westin began telling Anna's story - and encouraging others to share their own stories - with the hopes that she could bring about change and help others. "I just really wanted to transform the horror of her death into something good," she says.

And she's seen forward movement with the AWA. In late October, she says, "Congressman Leonard Lance (R-NJ) and Congresswoman Doris Matsui (D-CA) championed a bipartisan amendment to include the provisions of the AWA in Congressman Tim Murphy's (R-PA) comprehensive mental health reform bill, the Helping Families in Mental Health Crisis Act (HR 2646)."

Billie Gray, executive director of The Emily Program Foundation, has seen the success of Westin's approach firsthand. The foundation provides scholarships so people affected by eating disorders can share their stories with legislators in Washington.

The goal, Gray says, is to raise congressional awareness of the scope of eating disorders and of how legislation might make a positive difference. By working at the federal level, she notes, changes can benefit the greatest number of people.

And that's why Gray and Lambert have high praise for Westin, who is determined to keep moving forward on Capitol Hill.

"I'm very persistent. I never stop pushing," Westin says. But she in turn praises Klobuchar, who has championed the cause from the start. "She really wants to get this done."